Seizure Update

It's been five and a half months since I had my first-ever, and hopefully last-ever grand mal/tonic-clonic seizure, so I thought I'd update you on that saga.

I was diagnosed with focal epilepsy based on my seizure and abnormal EEG.  It feels weird to say that because except for what happened on November 24, 2019, I've not had any epileptic-like symptoms.  That doesn't mean it couldn't happen again, which is why I've been very careful with taking my anti-seizure medication every 12 hours.  Thankfully in this day and age of carrying a portable alarm with me, aka my iPhone, it's pretty easy to remember to do so.  Last week when Jeff and I were going on our walk, I knew that we'd still be out when my medication alarm would go off, so I made sure to bring my pill box and some water with me.

It's a process to fill a month's worth of medication into my rainbow of pill boxes, but at least I know that I've taken my medicine based on the empty box.  (Also included are OTC allergy meds because grass and pollen have declared war on me this year)

As I said, I don't feel like I have epilepsy.  But, I'm not taking chances that I don't, so along with diligently taking my medication, I'm also not doing things like taking a bath, or swimming alone, or riding my bike.  That last one was a hard decision because during this pandemic, riding a bike in my neighborhood would be nice.  But it would be a hard fall if I suddenly had a seizure, and it could possibly happen in front of a moving vehicle, so biking is off the table for me.

Regarding medication:  I've ramped up to my full dose of Lamictal and am completely off of Keppra.  I'd hoped, since I was at the full dose of Lamictal before I tapered off of Keppra that I'd be finished with side effects, but it's been several weeks without Keppra and my side effects have gotten worse.  It's irritating because I cannot find words when I'm trying to speak (and write), I can't remember things, I make typos like crazy, I'm super clumsy and can't tell you how many drinks I've knocked over and other things I've spilled.  It's fun being me. 

The only other side effect of Lamictal that scared me was when my eyes suddenly started moving rapidly from side to side.  I happened to be sitting down the first time this happened and called for Jeff because I wasn't sure if this was the start of another seizure.  Nothing else happened, and in the meantime he was looking up Lamictal and rapid eye movement and sure enough, that was connected.  Of course, I'll let my epileptologist know about this and the other side effects when I see him - well, via a telemed video, thank you coronavirus - later on this month. 

All in all, things are back to normal for me.  Yes, I have some side effects that I'd like to go away, but the fact that I've gone this long without another seizure is promising.  And I'd like for it to stay that way.

S-E-I-Z-U-R-E

Welp, things are still up in the air regarding my seizure.  My visit with the neurologist was interesting - she was nice enough but matter-of-fact when she said that my EEG showed abnormal brain activity and therefore I have seizure disorder, period, end of story.  She didn't seem to think that the medications I'd been taking had any bearing on the diagnosis, and said that I would need to be on anti-seizure medicine for the rest of my life.

Now, I'm not saying she's wrong - obviously if the test showed that my brain wiring was firing funny, then it was.  But she didn't think another EEG was in order, or that the other factors might be a consideration in thinking this was a one-off issue rather than a permanent diagnosis, which...I don't know.  I'm not opposed to taking the medicine if that's what I need to do in order to prevent another seizure from happening, but it feels like there might be some more testing to be done, considering all that's been going on with my body this year. 

Unfortunately, we live in Hooterville and there aren't a lot of neurologists around.  And yes we can go to a bigger city like Houston or Austin or Dallas but I don't just want to make an appointment with a random doctor; a recommendation would be nice, you know?  Luckily I happen to have an "in" in the medical community via Amanda, my PT/boss/friend.  She's asking for recommendations from some neurosurgeons that she works with; so far, nothing has panned out but there may be a new neurologist in town early next year so we'll see if that might be an option.

Meanwhile, I'm still dealing with a double whammy of post concussion syndrome, which can last at least six weeks, according to both of my doctors, plus the whole wonky brain wiring/seizure thing - oh, and getting used to the anti-seizure medicine, which can take at least four weeks.  So I guess that would be a triple whammy.  All I can tell you is that I can go from fine to all systems shutting down in a matter of minutes; lights and noises are overwhelming; and no one is getting a Christmas card this year. 

Also I need a nap.

Also seizure is a hard word for my fingers to type.

Also this post took me more than a day to write.

So yeah, I'm a mess and while I'm working on blog posts because I like to write and want to post fun stuff like pictures from our trip to Universal Studios, I'm having to take many breaks along the way and who knows when my next post will be up.  I'm not going anywhere, but I'm not exactly all here, either.

In Which Paco Earns His Keep

If there was ever a dog who has earned the (wo)man's best friend status, the Lassie rescuing Timmy from a well, the loyal friend who won't leave your side, that would be Paco.  I've long known that this was his personality, but discovered just how far he took his loyalty oath on the Sunday before Thanksgiving.

Apparently I had a seizure Sunday evening, while standing in the kitchen.  Of course Paco was right by my side, as always, and while I lay collapsed on the ground he barked his head off - but didn't leave me - until Jeff, who had been in his office with headphones on while playing a computer game, heard him.  I think it's an understatement to say that when Jeff rounded the corner into the kitchen and saw me laying there, eyes wide open but seeing nothing, body rigid, a bit of blood coming out of my mouth - well, he panicked.  He called 911 and after some dead air and more panic, finally connected, and within a few minutes help had arrived. 

I'm having a hard time reconciling what happened.  I'm still very confused.  I hadn't felt well for about 24 hours prior to the seizure - we'd spent the morning with the Renegades at Blue Baker and I was fine, but later that afternoon my stomach was upset and I ended up throwing up one time that evening, and just felt not great all day on Sunday.  Diane had texted me to see if I wanted to go to a movie with her on Monday, and my last reply to her was at 7:43; I can see by Jeff's phone records that he made his first 911 call at 7:45, so very little time went by before I was found and help was summoned.

I became aware of the commotion - Paco was barking like crazy, there were a lot of men in blue clothing in the kitchen, and one was in my face asking me really hard questions like what was my name and what day was it and what year was it.  I'd say I felt stupid that I couldn't answer these questions but I was too confused...nothing was making sense to me.  Where did all of these people come from and how did they get into my house?  I remember hearing someone say that I had a large bump on the back of my head and then they put me on a stretcher and brought me out to an ambulance.  They kept asking me questions and I just didn't have any answers for them...later on Jeff told me that it was the scariest thing to see me so blank.  Well, scariest after seeing me on the floor, that is.

They took me to the hospital and when they brought me out of the ambulance, Jeff was standing there - apparently he'd been in no shape to drive so they had him ride along in front.  There were more questions asked but mostly I was in confused shock...I'd just been texting with Diane and then my house was filled with people, what the what??

Jeff called Diane, who met him at the emergency room.  By the time I took this picture it was late and I felt bad that they were both just sitting around, but I was reminded that they kinda owed me (they didn't) for staying with them in the ER in Houston after the half marathon where we all had food poisoning.

They sent me for a CT scan right away, which didn't show any brain bleeding, just the soft tissue swelling where I'd hit my head when I fell.  Blood work showed an unusually low potassium count so once I was admitted, I got to enjoy four bags of potassium via IV overnight - and that's when I also learned that potassium hurts like hell to go through your veins.  Not fun.  Around 6:00 am I was taken for an MRI where everything was OK except for the bump.  A few hours later I had an EEG, where they put electrodes all over my head and then did a series of tests with bright lights, eye movement, and rapid breathing.

So many electrodes!  This took a while to get set up.

I must have failed the EEG because it showed "seizure activity" - which, really?  After going over my history and medications, the ER doctor's thoughts were that this might have been caused by a couple of medications that I'd been taking.  One was Wellbutrin, an antidepressant that lists seizures as a side effect.  You guys are aware that this year has been a crap one for me since April, when I herniated my disc at L3 and lost running and working out and lived with horrible pain for months...hence the depression and medication.

Along with the Wellbutrin, I was also taking Gabapentin for nerve pain.  Turns out it was originally an anti-epileptic medication although that's not why I was taking it; but it may have been unknowingly keeping me from having a Wellbutrin-induced seizure all this time.   My neurosurgeon said I could stop taking it after back surgery, and I did a very slow taper off of it, finishing just over a week before I had the seizure.  Maybe when I got that medicine out of my system, it allowed the other one free reign to wreak havoc on my system.  That's the current train of thought, anyway.

I was released nearly 24 hours after I'd been brought to the ER, with a prescription for an anti-seizure medicine, instructions to stop taking the Wellbutrin, a referral to neurology, and also instructions to avoid intense light stimuli, which probably wouldn't have been such a big deal had we not been days away from our long-planned trip to Universal Studios Orlando, home of intense light stimuli.  I already knew that I'd have to be careful with choosing rides that didn't slam me around so I wouldn't hurt my back, but now there's an issue with lights?  Geez.

Getting back to Paco, poor dog - when Jeff finally arrived home sometime after midnight, he said Paco ran all over the house looking for me.  Then he slept on Jeff for the rest of the night.  But the funny thing is that when I finally came home the next evening, he greeted me but then wouldn't stay near me.  I know he was traumatized.  It took him a full night before he decided he could stand to sleep next to me.  We were all exhausted.

I recovered as much as possible over Tuesday and Wednesday, and then we flew out to North Carolina very early on Thursday (Thanksgiving) morning.  At Jeff's request I wore my Road ID band, just in case something happened while I was away from him.  I'm really glad we still went on our vacation because have I mentioned how much of a crap year this has been?  That said, parts of the trip were rough for a few reasons.  When I fell and hit my head during the seizure, I got a pretty bad concussion, which brought about a host of issues - I'd be doing OK and then suddenly lose all of my energy and feel so tired that I could barely walk - it felt like I was trudging through quicksand.  In the months leading up to this trip, pre-seizure, Jeff and the kadults had mentioned renting a wheelchair so I wouldn't have to expend too much energy walking around the park - heck, just from where you go through security to the park entrance is nearly half a mile, and then it's nearly another half a mile to Diagon Alley.  But I refused - I'd felt like such an invalid all year that I didn't want to give in to being wheeled around Universal Studios.  Turns out that when the fatigue hit me, I'd have gladly taken a wheelchair ride.

I had been so shocked at having had a seizure that I didn't focus enough on what a concussion does to your body.  After a nap I'd be good to go for another few hours, but once again, fatigue would hit and I'd be done.  I was, and still am, weirdly overemotional which apparently is another part of having a concussion.  Oh, and my eyes randomly dilated nearly a week after the seizure, which was super painful.  I'd brought along my darkest sunglasses but even wearing them wasn't enough to keep my eyes from hurting when I was outside.  That lasted for about five days.  I had posted about the incident on Facebook, along with some pictures at the park, and heard from a former childhood neighbor who'd also recently had a concussion; she gave me some good advice and helped me to stop feeling so bad about feeling so bad.

This week will be interesting - I have a post-ER follow up visit with my regular doctor this morning, and then tomorrow I have an appointment with a neurologist.  At the moment I am not allowed to drive; I'm not sure how long that restriction will be in place but considering how the seizure happened with no warning, I'm OK with not driving just in case.  Honestly, I'm beyond horrified that this happened the day after I held baby Aiden for hours at Blue Baker - the idea that I might have gone down while holding him makes me cry just thinking about it.  I'm hoping to go back to work, brain-willing; luckily Jeff's schedule is loose enough that he can drive me there and take his lunch when I'm ready to go home.  All I can say is, can we just skip ahead to 2020 already?  I'm done with 2019.